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A week ago I had a routine PET scan that indicated everything continued to look good. I feel very fortunate to continue to get results like these two years after my initial metastatic diagnosis. Following the scan I wrote the quick update below. In the craziness that has happened due to spreading COVID-19 in the past seven days, my cancer scan results seem pretty insignificant in the grand scheme of things. My kids’ school is closed through the beginning of April. We have been isolating ourselves and while Travis and I are still working on-site, it’s touch and go. Being in healthcare, my job will never really close. I am lucky in that for the next two weeks I am working the night shift and I have family able to help with childcare, but the stress of managing my family and my job in these uncertain times is weighing on me heavily. My thoughts are also with several of the at risk people in our community, many who help deliver the medications I prepare to local hospitals, and are very much more susceptible. So, while I will happily share the passage I wrote, my heart is heavy with the sadness and uncertainty that is affecting all of us.

Scan results and thoughts: I am happy to report results of another good scan. The specific verbiage in the report is “No findings to suggest recurrent or progressive malignancy. Stable sclerosis and mild residual FDG accumulation associated with treated manubrial metastases”. For me, I think a good way to describe my perspective of living with this disease is a heavy fog. I recently saw a picture of a hiker in extreme fog, so it appeared that he or she was at a standstill and didn’t know what lie ahead. When I got diagnosed with metastatic disease two years ago, a heavy fog came over my “life trail” so to speak. What would normally be on the horizon…mountains, rivers, trees, etc. all abstractly representing normal milestones I might be looking forward to or thinking about…. graduations, future birthdays, vacations, work and life achievements…ceased to exist…instead those visions are now just fog. I have no idea what lies ahead. Given the relatively good prognosis of my initial diagnosis (yes, it had metastasized, but only to one organ, my bones, and only in one limited area), I am not surprised that I am still up and running, working, writing, parenting…two years later. I expected there was a good chance that would be the case. That being said, it’s cancer. My body has let me down too many times for me to take anything for granted. I am well aware my health status could change on a dime at any moment. What a good scan gives me in this pictorial representation of a foggy trail, is a clearer path for the near future. With every good scan, I feel I can see for a little longer. A good scan gives me clarity for an extra 100 meters…6-12 months, where I can make plans, look forward to things, and just remove cancer thoughts from my mind for a while.

December was a big month for me. I turned 40 and celebrated my 2^nd birthday and 2^nd Christmas with metastatic breast cancer. Turning 40 was big for me, not because I expected to feel different, but because I have had two drastically different emotions pulling at me, gratitude and disappointment. I was diagnosed with what can be an extremely quick-moving terminal illness when I was 38. I am obviously thankful I have reached my forties and it doesn’t escape me that my luck continues to grow as the years go by. On the other hand, I had big plans for 40 that didn’t involve metastatic breast cancer. My plans specifically involved a big 5-year survival bash that would coincide with turning 40. Had my cancer not returned, this upcoming March would have marked my 5-year survival mark. This is the point at which the chance of a cancer recurrence becomes minimal, a real holy grail for any cancer survivor.

In addition to my somewhat higher state of emotion surrounding my birthday, I am learning that holidays in general, but maybe Christmas most of all bring such an awareness of my probable limited time left. I continue to struggle when I encounter “milestone” situations. This past fall we got to see ninth graders get confirmed in our church. It looked like a special moment shared between the kids and their parents and all I could think was that I might not be up there with my kids when it’s their time. Last Christmas I was really sad because I had to work on what I thought might be one of my last Christmas’s. This year was better, both because I didn’t have to work and I feel more confident that I’ll have more holiday seasons to enjoy, but I still wrestle with the sadness of a shortened life and the anxiety of trying to create the perfect holiday in light of that. My vision of normal life progression is that you spend your time in your 30s, 40s, and 50s as the sandwich years….time where you both care for your own kids, work hard in your career, and begin to take care of your parents. It’s not necessarily a fun or joyful time of life, but you get through it to hit the “glory years” of retirement, the time when you can do whatever you want because, heck, you’re old. I’ve alluded to this before, but one of the hardest things for a super-planner like me is letting go of my plans. Realizing the odds are against me to hit retirement and enjoy my probably overhyped and delusional concept of old age.

I refuse to apologize if this seems like a message of despair. Over the years of writing this blog and talking to different people about my cancer I’ve gotten a fair amount of good-intentioned feedback and comments basically telling me to “keep my chin-up”. I feel like I have kept up a pretty good attitude, but I can’t escape the facts….at this time about 10% of patients with metastatic breast cancer are still living after 10 years. I’ll admit that I didn’t do a bunch of research to support that number for a variety of reasons. No one can really know the specific prognosis for each patient. The first question I asked my doctor…” Could you tell me about how long….” That’s all I could get out before he answered a harsh “No”. I tried a different tactic with my next doctor… ”What’s the longest survival you’ve had for a patient with metastatic breast cancer?” Her answer…” definitely into the double digits…11-12 years”. Fortunately, these numbers are drastically changing. I fully expect the 10% number will go way up in the next 2-5 years. I really believe there is a decent chance a cure will happen before my time is up and even if there isn’t a cure, there is already a large array of options to try when treatments start becoming ineffective. As daunting as it seems at times, I think a realistic vision of my life is a continuing attack on cancer with better, more targeted treatments coming just as one treatment stops working.

The realization I’ve come to with all the contemplating and processing I’ve done this holiday season is that I need to be intentional in my day-to-day life. To that point, shouldn’t we all try to live that way? We all have choices we can make every day that affect how we feel about ourselves and our lives. I became resentful when I first was diagnosed with metastatic breast cancer that my time was being taken away from me. I felt it was unfair that I was having to spend free time in waiting rooms commiserating with a bunch of senior citizens. Over the past 18 months I have been able to manage my appointments and labs so that I only spent about 8 hours total in appointments, scans, and labs in 2019. Some of that was just general good luck with treatments and response, but there was definitely some proactive planning that I did to take back control of my time and I am really proud of that. As I enter 2020, I hope and pray for continued good health and “No Evidence of Disease” or NED, but I also have the confidence and faith that I will be able to manage whatever happens.

I am happy to report I had another PET scan on October 14th and the results were great!  The area in my sternum that has been showing signs of healing looked stable and no new areas of metastasis were found!  These scans are fairly anxiety-provoking for me.  As I’ve mentioned before, I have definitely had the rug swept out from under me in terms of bad news multiple times in the almost five years that I’ve been living with breast cancer and I think it will just take time for those hard times and bad memories to fade away and be replaced with the feelings of hope that a scan can be a positive reassurance in this disease.  Because I’m just not ready to face any more negative surprises (i.e. cancer has spread to liver, lungs, brain, etc. and more surgery, chemotherapy, and/or radiation would be needed), I tend to assume the worst going into these scans.  I also have noticed that I feel every ache and pain as scans get closer and worry that these are new spots of cancer popping up.  I am sure all of these feelings are fairly normal for cancer patients and I am confident that I will become more comfortable and aware of these feelings with each scan and hopefully become more hopeful with each good scan.

I am guessing my next scan will be sometime in mid-2020.  I am still assessing whether or not to stay with my new oncologist in my current clinic or try moving to the UW Hospital system, which is connected to my clinic, but bigger and much more inconvenient to get to.  Hopefully I won’t have any updates in terms of my health for a while.  I continue to tolerate the medications well and my appointments have decreased from monthly to once every two to three months.  I would say as a metastatic cancer patient, it doesn’t get much better than this.  I am starting to see a future again at least for the next five to ten years where I can see my kids get through middle school and possibly even graduate high school and for that I am so thankful.

Last month I found out that my oncologist was leaving his practice and moving to Florida.  This news, like so many other pieces of information I’ve received in his office, hit me like a ton of bricks.  To say I was happy with him is an understatement.  While I can say I was extremely satisfied with him during my initial years of cancer management, he became my lifeline once I found out the cancer had metastasized.  As supportive as my friends and family have been, he’s the one who gets it.  He’s the one who I can reasonably talk to about my treatments, without constant questioning, fear, judgment, explanations, and rationalizations.  For as much as I dread appointments and hate taking time out of my schedule to hang out at a cancer center, I liked seeing him.  That doesn’t mean I didn’t proactively try to avoid appointments, and probably will continue to do so to the extent that I can.  But he made it bearable.

Before I got cancer, if you would have asked me how important the right oncologist would be to me personally, I would have probably said not that important.  I don’t need a shoulder to cry on.  I’m not looking for some magical homeopathic remedy I can invest in.  I don’t need someone to “sell” me their skills as a practitioner.  All I seek is someone who knows the business, knows the latest published data, keeps abreast of the clinical trials, both finished and ongoing, and makes logical decisions within the current clinical guidelines.  Then I got diagnosed with cancer and realized a good oncologist is so much more.  I don’t know how, but my oncologist can empathize like no other.  He always seems to have time, even though I’m sure he doesn’t.  I can’t tell you how many times I’ve sat in an appointment thinking… “this guy has got to get going…I’m just going to stick to my few bullet points and get him moving along” …. and then he’ll ask about my family.  He even gave me some unsolicited marriage advice when I told him I felt I was more irritable after a medication adjustment and he said “Yeah, that’s pretty common and many times the husband is on the receiving end of this”.  He was probably more right than I’d like to admit and I made a mental note to ease up on Travis (whether Travis thinks that helped is another story).  I think the hallmark of a good oncologist is the ability to listen and work with the patient as a partner in treatment.  Obviously, my opinion is that my oncologist is a good listener, but I would also hear comments about his bedside manner out in the community.  I began to realize that somehow I got really lucky that I got in with this guy.  And as terrible as news of metastatic breast cancer is and was, I felt I had a really good team.  I liked our plan.  I liked the radiation oncologist he set me up with.  I was hopeful.

I am set up with a different oncologist that I will meet with in a few months.  Fortunately, I’m in a remission/steady state/maintenance period with my cancer and medications, so I guess it’s a good time for change if there has to be one, but I will miss Dr. Hei.  One time he was commenting on my low pulse and took his own pulse, which was apparently much higher and joked “It’s because I’m always around this place”.  I’ve always thought being an oncologist would be such a depressing job, but he made it light-hearted while still showing concern and giving attention to the disease.

On another note, a new season of my favorite TV series has just come up on Netflix, Stranger Things.  If you ever want a visual representation of cancer, that show is it.  The creatures just keep coming back and just like the mutated, cancerous cells in my body, they are eerily similar to their “normal” counterparts, but crazier, more dangerous.  And they just don’t die.  You think they’re gone, but they’re smart and survive very well.  It’s amazing to me how indestructible cancer cells can become.  Sometimes I feel like I have my own science fiction drama unfolding in my body.

 

Like most homeowners, we periodically find ourselves needing to fix and replace various fixtures and appliances around the house.  Over the past year the fan and overhead light in our bedroom have become possessed.  While there is one button for the light and one for the fan, they do not work together.  If you’re trying to turn on or off both the light and fan at the same time, not only will both of them fail to respond, but this will cause one or both of the fixtures to become temporarily disabled for an unspecified amount of time.  Last year, in an effort to trouble shoot and fix this problem, my husband, Travis, disassembled the whole apparatus.  He didn’t discover anything amiss and re-assembled the whole thing without really fixing anything.  This process was apparently enough to cause a temporary “fix” in the system for the rest of the summer.  Now that the warm weather has returned, we’ve been wanting the services of a ceiling fan again and it has become apparent that it is back to its old ways.

One really nice thing about Travis as a husband and roommate (and probably co-worker) is that he is not only handy around the house, but he aggressively fixes problems.  I would probably say he is in the top 1% of spouses in this category.  He decided he needed to fix this problem right away and a new fan/light fixture was needed to take care of this once and for all.  He immediately began his search for a new fan.

On a side note, one interesting thing I have learned from being married to a do-it-yourselfer is that when installing your own light fixtures, faucets, doors, appliances, etc. there are generally only a few styles or selections that will work for your house.  I feel like it is deceiving when you enter a lighting, plumbing, tile, or home design store to see all of these fancy options, when in fact only two or three options are even a possibility without spending thousands of dollars re-wiring or moving things around.  When we initially replaced the 1980’s era ceiling fans in our bedrooms ten years ago, Travis gave me three rather ugly choices to pick from.  Basically all the same simplistic style in three color options, white, light brown, and dark brown.  I just picked one and moved on because, another thing I’ve learned from being married to Fix-It Felix, just let him do his thing.  Sometimes it’s not worth the hassle.

Back to the most recent fan replacement.  This is where the cancer life makes it appearance.  It was bedtime and I was reading a book by my favorite comedian.  I happened to be reading the chapter where she was talking about the process of her mother dying from cancer and the last few weeks/days of care.  As a person in general, but especially a person with cancer, end-of-life care is important to me.  I want to be ready for it and more importantly, without depressing everyone around me, I want my family to be ready for it.  In the book, the comedian (who is obviously well-off and probably provided the best end-of-life care for her mom) stated that she briefly left her mother’s side and when she came back her mom was covered in vomit.  I began to ponder how much that would really bother someone in the midst of dying.  Do you realize you are covered in vomit?  I doubt it.  How much would it scar my husband and kids to find me in that situation?  Possibly quite a bit, but in the grand scheme of losing a loved one, maybe it doesn’t even matter.

In the middle of all of this pondering I was doing (all while falling in and out of sleep, because that’s how I read/fall asleep at night), I observed a soft light and footsteps trudging up the stairs and I sighed with annoyance as my husband started heading over to me with his laptop.  This was not a time to have a family discussion.  I was not only in the middle of falling asleep, but now I had the foggy thoughts of death in my mind. He wanted me to look at a fan.  Just like ten years ago, there were two ugly choices and both in silver/gray which goes against the whole “warm” color scheme he has going on in our house.  I didn’t even bother to look at the fans, but rather just snapped back “They’re the same fan!”  No, they were not the same fan, one was rounded, one was square.  Finally, I just said “Whatever, I don’t care!” and went back to the more important problems in my head at the moment (and for the next few hours).  I find myself thinking less and less about the cancer these days, but sometimes it’s just there and everything else in life becomes background noise.

Last year at this time I was just beginning the long process of getting diagnosed with metastatic breast cancer.  Those were unpleasant times and memories that I just hate to relive.  The initial thinking that the persistent pain in my sternum might be cancer.  The mixture of anxiety, panic, denial, doubt, and frustration that I felt everyday for over a month while debating about how to handle the pain.  I knew what would happen as soon as I told my oncologist about the pain.   We would go down a path of scans and appointments and because I felt about 70% sure it was nothing, my main concern was actually finding time for the appointments.  I thought it would all be a waste of time.  And then when it wasn’t and the worst case scenario started playing out a whole new set of problems developed.  I just didn’t want to deal with it all over again.  And I was scared.  Scared that new problems would keep turning up.  Scared that I’d choose the wrong treatments.  Scared that I would yet again let down my family.  And mainly scared that I wouldn’t see my kids grow up.  I just had this vision of spending the rest of my life in and out of oncology clinics and hospitals.

Here I am a year later feeling pretty good and going in for another PET scan.  I’m always amused when I have PET scans because it’s a nuclear medicine scan.  The drugs I make are being used to produce the image of the cancer in my body.  I remember seeing patients prepping for PET scans at Ohio State where I did my authorized user training and never in a million years did I think I’d be one of them this soon.  The whole concept also seems over-simplistic to me.  Basically radioactive sugar is injected and because cancer cells love sugar (as every treat-cancer-naturally proponent loves to remind me) the radioactivity goes right to the cancer cells.  One key part of the PET scan is a rest period of 45 minutes in a dark room to calm your body so the radioactive sugar will really concentrate in the cancerous cells and not to muscles that would be needed to move, talk, or read.  Laying still in a dark room for 45 minutes and then knowing that you have to spend the next 40 minutes in a CT/PET scanner is not the most fun thing ever.  Thoughts that started going through my head:  Here I am again, getting a cancer scan, how did I end up here?  What happened to my life?  I wonder what this scan will show?  What would I even do for treatment if something did show up?  Does thinking use glucose?  Is my overthinking going to make it look like I have a brain tumor?  Shoot, I just looked at the clock again, will that cause my eyes to light up in the image?  Yeah, I’d like to say I had some deep spiritual conversation with God or used the time wisely to solve all of my life’s problems, but I basically just repeated these same thoughts over and over again for the entire waiting period and scan time.

I am happy to report everything looked great!  My oncologist told me that based on the scan there is no evidence of cancer in my body!  Overall I’ve been feeling healthy, so can’t say I was surprised, but you never know what a scan will reveal, so just having a good one is such a relief.  I really hope I can give this positive, annual report for the next few years at least and then who knows what new treatments might come along if something does come back?

Last year at this time I spent the drive home from my oncologist sobbing and then continued sobbing in a rolled up ball on my bed.  This year I actually cried tears of joy driving home from the oncologist.  I feel like my life has been on hold and now I’ve got it back.  My treatments and appointments are even going to become less frequent, so pretty soon my monthly visits will turn into quarterly visits.  I know it’s too early to proclaim a Lance Armstrong-esk victory over cancer, but it feels good.  Another year down, another good scan in the books.  Overall I’m feeling pretty good and definitely feeling grateful that God has given me more time with the people I love.

I honestly thought when I got diagnosed with the recurrence of breast cancer that I would quit work.  But just as I am not quitting life, I am not quitting work quite yet.  I am proud to say I am now going on almost a year working full time with metastatic breast cancer.  It has not been the easiest year and I have had a tremendous amount of help, but I did worry it would be much worse.  I really like my job.  I feel I do a good job and I feel I am making the world a better place through my work.  Work is really good for me psychologically and it would be more difficult to deal with the thought of having a terminal illness if I didn’t have the ups and downs of work to distract me.  Not to discount the time, effort, and money I have put into educating myself so I can enjoy a job that pays decently, but most days I feel fortunate to go to work.  The other bonus is that I work for a large company that provides me with vacation time and other benefits.  I do not take this for granted.  While no one enjoys working for “The Man” (whether that be a corporation, government, etc.) and playing the political game once in a while to get ahead or even keep your job, I know very well that if I were self-employed, this diagnosis would have been much more detrimental to my life.  Once in a while I’ll throw a pity-party for myself and at one point I found myself complaining to my husband that I felt I should get some type of extra time off for appointments (you might call this part of the political game, yes of course I qualify for sick time, but I can really only take it at the expense of my co-workers, and that can lead to other problems).  To this complaint, my hard-knocks, life-isn’t-fair, cynical husband quickly reminded me that I get six weeks of vacation time, which should be plenty for my appointments and he once worked with someone who went in for chemo over his lunch break because he had five kids and a wife to support, so I should just get over it.  Okay, fair enough, point taken.  Anyway, while I also assumed at one point that I must be the only person going through this hardship of working full time with metastatic breast cancer, of course I am not, there are plenty of people that continue to work.  After a year of going through the ups and downs of working with cancer and the constant internal struggle of how to best live what might be the last years of my life, I’ve come to the conclusion that working is better than dying, so I should just enjoy the fact that I’m well enough to work while I can.

One interesting element of my job is that I spend about 50% of the time working the “night shift”, from 1:00 a.m. to 8:00 a.m.  The night shift is actually the most critical shift in nuclear pharmacy due to the production schedule of radioactive drugs.  For me and most other nuclear pharmacists, it is the most enjoyable.  But it is the NIGHT SHIFT.  I don’t care who you are, the vast majority of us have a really hard time waking up at midnight to go to work.  It’s really difficult to hear that alarm go off at 12:30 a.m. and make myself get out of bed.  One “coping” mechanism I’ve always had was being able to tell myself that I won’t have to do this in retirement.  That’s out the window now…I think I’m in my retirement, and just working full time and raising young kids at the same time (I guess what many retirees are doing nowadays).  The other “coping” mechanism I have is that I sleep really well from 9:00 a.m. until 1:00 p.m., so I can generally just crash when I get home from work.  Appointments disrupt this.  I try my best to schedule around sleeping, but sometimes it’s unavoidable and that can make the whole week rough.

Now that I’ve had cancer for almost four years and experienced many of the treatments, I can reflect on how the treatments have affected my work.  I’ve preached this many times and will continue to do so, but every cancer is different and every person responds differently to treatment, so I always hesitate to put my experiences out there for comparison.  My treatments over the past four years have been a combination of surgery, chemotherapy, hormone therapy, and radiation.  Of these, the surgery was the only intervention that required me taking off work.  I took off two weeks post-mastectomy.  To be honest, I was extremely lucky and had really good healing, so probably did not even fully need the time off, but it was really nice to just have the surgeon make the decision beforehand and not question every day whether or not I should be working.  Hormone therapy was the other “easy” decision.  I haven’t needed to take any time off for that.  Chemotherapy and radiation were trickier to navigate in terms of how to balance treatments with work and life.  So far I have been completely blessed during my treatments in that I never felt too sick to work.  That being said, I will completely admit that balancing work during both chemotherapy and radiation was really tricky and there were definitely days when things just seemed to fall apart.

Three and a half years ago I underwent chemotherapy to help prevent a recurrence and fortunately I had a relatively easy chemotherapy regimen.  One question I’ve always wondered when I hear people are doing chemotherapy is “How sick are they?”.  I mean, are they just throwing up every hour or are they spending the whole day in bed?  There is a huge scale of “emetic potential” for chemotherapy drugs and they vary greatly.  Also, there are a lot of really good anti-nausea medications out there and depending on the regimen, the clinic will definitely give premeds like candy to prevent discomfort.  Like I said, my regimen was fairly easy.  For me, the chemotherapy experience was like the first trimester of pregnancy.  I never really felt great, but I could definitely work and function.   I chose to work the night shift for the two months of chemo so that I could easily go in on my treatment days without taking time off or disrupting the schedule in general.  As I’ve mentioned before, the night shift is not a piece of cake.  It was rough working the night shift for two straight months while going in for chemo and labs every few weeks.  Had I been in a terminal cancer situation at that point, I’m sure I wouldn’t have pushed through like I did, but at the time I was pretty confident the cancer was never coming back and I would never have to go through this again.  The only hiccup I can report with chemotherapy is that I developed an allergic reaction to one of the medications about six weeks into the regimen.  I developed hives, which are never fun, especially during the hot summer.  Then one night, before work, my face swelled up.  It was pretty bad, I wish I had taken photos.  At that point it was midnight, I needed to go to work and I was basically debating between going to work and going to the emergency room.  I would always tell anyone experiencing what seemed to be the beginning of an anaphylactic reaction to go immediately to the hospital, but this is not what I did.  I loaded myself up with Benadryl® and steroids (I had plenty on hand as part of my pre-chemo medication regimen) and drove to work.  At work I then put the technician I was working with in an uncomfortable position by appearing with a disfiguring swollen face and telling her she might need to call 9-1-1 at some point during our shift.  But the swelling went down, we changed my chemo regimen for the last treatment and life went on.

Radiation was easier than chemotherapy in many ways, it was just more of an annoyance.  I had radiation every day for five weeks, so basically I just got sick of going there.  But that clinic was close to my work and I was usually in and out in 20 minutes.  Radiation is different than chemotherapy because it isn’t usually a systemic thing, so while it can have dramatic side effects at the tissue being treated, it doesn’t really affect the rest of the body.  Since my radiation was targeted towards my sternum and throat area, I did have problems eating for a couple weeks since my throat was sore.  I was actually pretty miserable and really starting to run low on energy from not eating, but I quickly recovered and regained the ten pounds I had conveniently lost.

I am now in more of a maintenance situation with regards to treatments.  I do get an infusion once a month and take an oral medication which has some of the immunosuppressing effects of chemotherapy, but to a much less degree.  I still meet with my oncologist once every one or two months and have labs and scans periodically.  While I don’t enjoy spending my free time doing these things, it’s not bad and I’m sure many people have more intense work-life balance issues than I do.  At this point it’s a matter of making an intentional decision every day to go to work.  As much as I enjoy spending money, I really have no interest in making money anymore.  I have very little interest in possessions.  Can’t take them to Heaven, right?  I guess that’s the difficult part about going to work every day.  I do like working, but sometimes I’m definitely choosing making money over spending time with my family and that’s hard.  I always assumed my life wouldn’t be in day-to-day situation until I was in my 70s or 80s and by then I would have gotten to enjoy retirement for a decade or so.  But here I am, 39, not sure how long I’ll physically be able to work and wondering whether I’ll have the opportunity to enjoy some form of “retirement” without too much physical discomfort or conversely, whether I’ll throw in the towel too early and cause my own demise from boredom.  I’m currently reading the book “Big Game” by Mark Leibovich about the NFL.  So far the author has focused quite a bit on Tom Brady and how much longer he can keep playing.  When reading it I feel like I can relate to the struggle of a professional athlete to stay relevant with an aging body at a relatively young age.  The author brought up the idea that “things might end badly with Brady” with regard to his relationship with the Patriots and referenced Brett Favre’s retirement “That spectacle was tough to watch:  Favre’s agonizing, his retiring, the public tears and questioning of whether he was “guilty of retiring early”; the unretirement and the different teams”.  To this question, Tom Brady’s father replied “It will end badly…it does end badly.  It’s a cold business.  And for as much as you want it to be familial, it isn’t.”  Like football, my job is pretty black and white.  Either you do the job and earn your paycheck or you don’t and I feel like the transition of discontinuing work is rarely easy for anyone.  So there it is…as much as I’d like to say I’m succeeding in feeling at peace with my circumstances and fully having faith that I’ll know when the time is right to move on to my next life activity, the truth is I’m unsettled by all of it and the basic question of how much longer I have haunts me every day.

I haven’t cried much since learning that my breast cancer returned, but the few times I do break down tend to be in the car driving to work.  I don’t know why that is.  It’s not like I’m sad to go to work or going to work reminds me of my situation.  Whatever the reason, on those days when I’ve had a tough drive in, I’ll park my car, sit there for a few minutes to compose myself and then march into work.  Once I step through the door to work I usually get inundated by some problem that’s come up or someone has a question about something, so my cancer is forgotten for at least the next few hours.  Problems such as finding a driver to go to Janesville become the most pressing thing on my agenda.  And this sums up what work is for me, a profitable distraction.

Pharmacy is an evolving profession and while I believe there are many pharmacists across the country who are working hard to dramatically change and improve the direction of pharmacy, I don’t like the public perception of where pharmacy is going, which seems to be robotics.  In school, one of my pharmacy rotations was a small, locally owned pharmacy in Madison that is of course, now out of business.  I found it so cool that at this pharmacy the pharmacist knew everyone who walked in the door.  All a person had to do was walk in the front door of this small pharmacy, take five steps to the counter and the pharmacist or technician had already pulled their prescription from the ready bin and was standing, ready to check this person out, answer their questions, and get them on their way.  This is part of the reason I went into pharmacy.  I either wanted to 1) do research for a drug company or 2) own my own little coffee shop/pharmacy.  To be fully transparent, there were two big problems with this small pharmacy I did my rotation at:  1) they weren’t getting enough people through the door to be profitable, especially as insurance companies kept scaling back on reimbursements and 2) they did mis-fill several prescriptions while I was there, mainly because they didn’t have scanning technology which is of course a big expense.  So, contrast this small pharmacy to where I worked at the time, a large retail store.  We had several repeat customers, for sure, that I (even being a casual, part-time employee) would recognize when they walked in.  But, for the most part no one really recognized anyone unless they were coming every other day (which, who wants to do that?) or a problem customer.  So, at my large store, you would have to walk past all of the food, toys, make-up (all things that are problematic to walk by with young children I might add), finally get to the back of the store, then wait in line, then wait 10 minutes while someone tried to figure out who you were (of course we always needed address confirmation, which offended plenty of people right off the back) and what was going on with your prescription (oh, it’s probably in the stack of 20 faxes that we’ve been getting all day, but haven’t gotten a chance to look at).  The pharmacist at these big stores, the person you are counting on to correctly check your medication, check your allergies, check for drug interactions (although, frankly so many people use multiple pharmacies that it’s only really a 50% check), check for appropriate refill history and any other items to do their job as a pharmacist is running around like a chicken with their head cut off trying to manage the technicians at different workstations within the pharmacy, data entry, filling, check-out, and the dreaded drive-thru.  As a parent, I love the drive-thru.  Pharmacists HATE the drive-thru.  I always found it interesting that as a pharmacist, I would make the same amount of money whether I worked in a store with a drive-thru or without a drive-thru.  Really, when I practiced in retail pharmacy years ago, half the problem was insurance.  “Umm, I need your insurance card” ….” Why would you need my insurance card!?!…. Here, take this” “Umm, that’s your library card”.  Not sure if it’s still such a problem, it probably is, but I find it ironic that in pharmacy school we prepped for all of these big, important research projects and conversations we would have with other professionals regarding the best therapies and in practice, we were really just insurance detectives and pill dispensers.

Back to my experiences as a patient, most of my prescriptions come from a mail-order pharmacy.  While I enjoy getting my prescriptions delivered to my front door, overall, I do not enjoy the mail-order experience.  Just for a quick example, today I received an automated call from the pharmacy stating that I needed to call them.  I’m sure anyone who’s dealt with any company over the phone can guess how the next 20 minutes went…. I called the number in the message…. automated system…” please listen carefully as our menu options may have changed” …. then about 10 minutes of menu options are listed before my option “oncology” comes up.  Finally, I get someone on the line.

“What can I help you with?”

“Well, I just got a message to call you”

“Okay, I’d be happy to help you with that” (WARNING…RED ALERT, these words actually mean this phone receptionist that you are talking to is not going to help you at all.  What will happen is that you’ll end up on the phone for a really long time, at some point resort to yelling, and then either get cut off or the conversation will end without any resolution).

“Okay, please give me your name, birth date, address, first-born child’s middle name, social security number, favorite teacher’s name” (okay, that might be a little bit of an exaggeration).

I give her my information.

“You need to give me your first name and zip code”

“ Oh, right I’m sure you have me mixed up with the other WARD on my street with my birth date…of course you need to my first name and zip code to clarify”

“Okay, I see you in the system, I’m not sure why you were told to call us, are you sure you are calling the right place?”

This is it, folks.  This happens all the time, it is so frustrating.  As a working mother who’s dealing with cancer, I feel like I have negative 2 hours to spare in a day, here I am monkeying around with a less-than-pleasant receptionist who just asked me why I was calling.  Every conversation I have with this mail order company goes like this.

There is another niche of pharmacy that I’m getting exposed to as a patient.  I now visit with a pharmacist who works with my oncology team periodically about my medications.  This is a relatively new thing at my clinic.  They obviously have always had a specialized pharmacist who checks and dispenses the chemotherapy that is administered at the clinic, but this is a more clinical type pharmacist who visited with me in person after an appointment a few months ago and periodically calls me to check in on my medications.  I like this guy (or it might be multiple people, honestly I’m not great at catching names when I talk to people on the phone) and he seems knowledgeable, but I get the feeling he’s still trying to find his place within the clinic.  Being a pharmacist, my perception of how helpful or necessary a pharmacist consult is to me is a little bit hard to judge.  My opinion based on my consults both in person and over the phone is that none of them were really necessary or helpful.  It felt like he just regurgitated information I had been told by a nurse or could read in one of the many informational hand-outs I’ve received.   I think that there is a good possibility that this is because either I am a pharmacist or because I haven’t (thankfully) experienced much in terms of adverse reactions to my medications.  Before I become the most hated pharmacist ever among my colleagues, I would like to add a few more comments.  I know for a fact that this pharmacist who is now a part of my health care team is incredibly intelligent and knows quite a bit about cancer medications.  While receiving one of my infusions one day, I overheard him discussing some nuances of some of the chemotherapy medications with the nurses.  He was giving high level advice to an audience that, quite frankly, already knows a lot about their drugs.  In summary, my experience with this oncology pharmacist was like many typical experiences I have had as a patient with pharmacists, I didn’t see his true knowledge in his interactions with me.  His vast knowledge of medications, interactions, dosages, etc. was not apparent when he simply read a 6^th grade level handout to me.

I’ve thought a lot of about the combination of my frustrations with inefficiencies in the healthcare system and frustrations with the limitations of pharmacy practice.  My solution to these frustrations is that pharmacists need to be able to prescribe.  This isn’t a revolutionary idea.  I remember it being mentioned at the Minnesota School of Pharmacy in 2002 and it is already a practice in the VA system for chronic conditions such as diabetes, heart disease, and cancer.  I’m sure this is what pharmacy associations and schools have been and continue to strive for, I just think it needs to and can progress faster.  With all of the technology we have and advanced knowledge of pharmacy technicians, we almost have a scenario where a skilled pharmacy technician can run a pharmacy.  In Wisconsin, many, if not most pharmacies employ a tech-check-tech program where a technician actually does the final check of a drug product.  This is a very important job, a technician has to have a lot of experience and expertise to do this, so why not elevate this position and pay to give all technicians a realistic job ladder to climb and achieve.  We need to move pharmacists out of jobs that do not really require the full education and knowledge that a pharmacist has.

I understand at least some of the issues with introducing a pharmacist prescribing scenario to the healthcare team.  I am sure most prescribers have a particular regimen in mind when diagnosing a patient.  I can only imagine it would be difficult to give up that control.  Who would ultimately be responsible for the patient who is either misdiagnosed or mistreated?  I understand this would be an issue, but it seems like we are already moving to more and more collaborative relationships between providers with doctors, nurse practitioners, and physician assistants working together to increase access to care.  I imagine a pharmacist would enter the picture in the same way the nurse practitioner and physician assistant are under the umbrella of the physician.  I really envision that used efficiently, a pharmacist could take a significant amount of work off of the plate of my oncologist and free him up to take care of more patients.  In addition to medication selection and follow-up, pharmacists can easily order and evaluate lab values and interact with insurance companies when prior authorizations are needed.  Finally, I really believe that every healthcare team should employ a pharmacist that has the job of placing medications orders and following up with the patients and pharmacies to ensure medications were received and are being taken in a timely manner, keeping a clean and correct medication history, and serving as the patient’s number one resource for drug information.  This system we have today of haphazard communication between a patient, receptionist, nurse, doctor, insurance company, and pharmacy is not working and I believe pharmacists can play a crucial role in fixing it.

Good news today!  I got the results of a few scans and they both looked good.  The first scan was a follow up CT to assess how effective my radiation treatment was.  It’s still a little too soon to tell for sure due to tissue repair and scarring, but overall the results were favorable.  The area of my manubrium that was cancerous showed signs of healing and bone reconstruction, indicating cancer cells have been successfully killed off during radiation.  The lymph nodes that were also part of my radiation treatment look much better.  It’s still too early to tell what, if anything, will still be visible on scans in a few months.  Even if nothing showed up on scans, it would still be assumed that there are a few rogue cancer cells floating around, so my other treatments will continue.  The other great news with this scan is that everything else looked good; bones, lungs, and liver looked good.

Aside from the CT scan, I also had a MRI of my brain a few days ago.  This was actually my major concern going into my appointment.  About a week ago I developed constant shooting pains on the left side of my head.  This was accompanied by some minor numbness also on the left side of my face.  When this didn’t go away after a few days, I became really worried and we got the MRI scheduled.  I thought for sure the cancer had moved to my brain.  I have no history of headaches, migraines, or really any pain, so I knew something was not right.  I have never had a scan that was good.  Scans have always brought bad news in the past, so I was mentally preparing myself for a worst-case scenario.  I began thinking about the next steps…brain surgery, whole brain radiation, quitting my job, cancelling my trips…it’s been a rough week.  The other possibilities I had thought of were an infection or blood clot, neither of which were appealing alternatives, but better than a tumor.  As it turns out, the MRI didn’t show anything, which is great news!  The thought is that I may have trigeminal neuralgia, a neuropathic pain condition that affects the cranial nerves.  Since the pain is essentially wiped out for eight hours with ibuprofen, this is way better news than anything I was thinking.

I’ve learned and been reminded of two things this week.  First, MRIs are crazy!  Not sure if this applies to all MRIs or just ones of your head, but the noises are the most nonsensical thing I’ve ever heard!  It’s like they gave a two year old his first band kit and told him to start playing the random instruments behind your head at full blast or some guy is just pressing sound effect buttons and laughing at you from another room.  There is no pattern to it, it’s just weird sounds…so random.  Second, cancer can be a really up and down experience.  I’ve been reading a couple other cancer stories this week (I’ve read two, now I’m an expert) and I’m always struck by how things change so quickly.  I went from thinking I had reached the end of the road this morning to thinking I’m the healthiest woman alive tonight.  You never know what the next day will bring.  Prepare for tomorrow, but live for today..always.